by Ellen Marie Edmonds
“To love and to cherish … for richer or poorer … in sickness and in health … till death do us part.” Those lovely words, so familiar from the traditional exchange of marriage vows between a man and woman, laid the foundation of unconditional love that framed our joyful marriage of 16 years. The word “matrimony” derives from the Latin word mater (“mother”) and the Latin suffix monium (which signifies an action, state, or condition). In other words, “matrimony” implies becoming a mother. But I never imagined I would become a mother to my husband.
In many ways, we had a storybook marriage. Frank was my Saint Joseph—a mature, strong, and gentle man who lovingly and protectively shared his wisdom and his very self with me. He had retired from his job as a chief executive officer at AT&T and remained active in business, military, church, and civic organizations throughout our marriage.
We lived life to the fullest, delighting in moments together and deeply cherishing one another. Life was indeed beautiful on top of the mountain. Then, in 2002, our life was changed forever when his car was hit from behind while stopped at a red light. A blow to the head triggered the rapid onset of advanced vascular dementia (a disease similar to Alzheimer’s), which robbed Frank of his mental and physical vitality. Our life together was quickly sliding down the mountain, and I began losing my husband and soul mate, one inch at a time.
Maternal and sacrificial love
Our marriage vows were explicit: “In sickness and in health…” Awaiting us at the base of life’s mountain was my highest call to love: to love my husband unconditionally during his dementia, in the way of God’s agape love. This call would be the ultimate test of my vows and the greatest test of my own faith.
My Catholic faith was simple yet strong, having been shaped and formed by many wonderful priests, spiritual directors, and teachings I learned from Mother Angelica and her Eternal World Television Network. Yet even with my strong faith, the constant change and uncertainties presented by Frank’s dementia produced moments of fear and pain. And in those moments, I often wondered if I was capable of facing the challenges ahead. Could I truly embrace this call to sacrificial love?
Love is such a misunderstood and misused word. Contemporary secular society usually identifies with love only as eros—the physical, sexual love that draws men and women together in courtship and marriage, to fulfill God’s plan of procreation. In faith, I knew agape is the unconditional, sacrificial love revealed by God in the person of His Son, Jesus Christ—the eternal love that transcends even death. I understood these things intellectually. Practically, however, my understanding of sacrificial love came from being a mother.
When my daughter was born, something beautiful happened in my heart. I cherished my baby girl and desired only to care for and protect her forever. As sleepless nights came, along with the challenges of mystery illnesses, I experienced what it meant to love sacrificially.
Initially, I had to anticipate her every need, responding to cries for feedings, diaper changes, sleep, or to be held. Soon she was crawling, walking, and putting everything into her mouth. Keeping her safe meant anticipating new behaviors and making necessary changes. Loving my daughter unconditionally, through all her stages of life, required constantly adjusting priorities.
Meanwhile, I grew in my understanding of my mother’s love and God’s love for me.
Lessons learned from our sacred adventure
When I accepted the reality of my husband’s brain disease and embraced the call to love him as my child, a tremendous conversion of heart occurred, and maternal love became the framework of God’s providence and grace. Frank’s disease was neither his fault nor mine; God had allowed it to happen, and there was no need for embarrassment. My strong husband had become my little boy and would eventually become my little baby.
Providentially, my first grandchild was born early in Frank’s dementia journey. Concurrently, I had “adopted” a mother facing an unplanned pregnancy, whose little girl (now my godchild) was born just three weeks earlier than my granddaughter. In faith-based hope, I loved them all. And as the two babies grew bigger, my husband grew smaller.
I hadn’t known Frank in his younger days. But what a sacred, lovely adventure it was to “meet” him in his moments of adolescence, childhood, terrible twos, and infancy, intermingled with lucid moments. Eventually, I witnessed the crossing over of the alpha and omega of life, when my husband diminished into infancy and my grandbaby became a toddler. Frank passed away at Christmastime in 2005.
By God’s grace, I recalled the teaching of Jesus (Matthew 25:31–46) that what we do to the least among us, we do to Him. Hidden in the little ones (both young and old) was the Alpha and Omega Himself, calling me to motherly love. And the Catechism of the Catholic Church (1039) quotes from a sermon by Saint Augustine, in which he attributes these words to Jesus: “Would that you had known that My little ones were in need when I placed them on earth for you and appointed them your stewards to bring your good works into My treasury.” Hidden in the crisis of dementia was “little” Frank, divinely appointed to be my steward, in need of my love.
Caring for my husband during his illness was not easy. I did not do it perfectly. But I did the best I could, trusting that faithfulness is rewarded with grace and wisdom to do God’s will in the present moment. Mistakes reaped fruits, which I candidly discuss in talks and writings, in an effort to bring hope and practical help to others affected by Alzheimer’s and other forms of dementia. By delving into the emotional, spiritual, and physical aspects of the disease, audiences can benefit from lessons learned by others who have already made this journey.
And the greatest lesson learned? The heart does not get dementia. In the heart, it seems, resides the transcendent “knowing” of a loved one. As my husband’s brain died, the familiar words that so often had passed between us lessened; yet he still knew me. His heart was alive and well. He could connect with me through the language of love: touching, hugging, kissing, laughing, praying, singing—even “dancing between the rails” when his hospice bed became our whole world. Heart knew heart.
Mystery and certainty
As Alzheimer’s and other dementia diseases increasingly afflict society, crossing all socioeconomic and faith boundaries, one must ponder why. My spiritual director, Father Angelus Shaughnessy, OFM Cap., wonders, “Could it be that God has allowed the dark plague of dementia, in all its forms throughout the world, to help us see the light of His love?”
One thing is certain: Caring for someone with dementia is a call to sacrificial, compassionate love. It is a call to motherly love, to seek and find the little one hidden in the disease. It is that same motherly love that seeks the little one hidden in an unplanned pregnancy. It is, in fact, that same motherly love in which Mary, Queen of Mothers, embraced our God in the little Christ Child Who lived His first nine months hidden in her womb.
Ellen Marie Edmonds is the author of Embracing Dementia: A Call to Love (2008). She is a frequent guest on EWTNglobal television and radio, and hosts the weekly radio show Embracing Alzheimer’s in Mind and Heart. You can listen to it live here. For more information on Ellen’s apostolate, please visit www.EmbracingDementia.com.